HLHS and Down Syndrome – We Aren’t Alone
by I strongly recall when we received AJ’s diagnosis. Things were grim. The doctors that came into our room were quiet, subdued, and almost scared to …
Tag: diagnosis
First Outpatient ENT Appointment
Today was a bit of a rough day. We had AJs first true ENT appointment to talk about his airway reconstruction and other things. While …
Stroke… (Back to the Hospital)
So. After 48 hours at home, Aaron left to run a couple errands and pick up his truck from the hospital when I noticed that …
Culture Negative Sepsis?
We are officially one week post surgery. The extra tubes are gone, except the art line which will likely go tomorrow, and his incision is …
Glenn Surgery Day & A New Diagnosis – Subglottic Stenosis
AJ went down to the OR around 9 AM this morning. We had a chat with his surgeon, Dr Gaynor, who always puts my mind …
Hospital Wedding and Pulmonary Hypertension
I haven’t written an update in a few days. I’ve been a little swamped with things going on, and fell behind! First off…. we are …
Failed Extubation, Again…
Today was an eventful day for Mr AJ. They tried taking out his breathing tube for the second time. Unfortunately, he wasn’t a fan of …
Today has been an incredibly difficult day, and I don’t suspect the days that follow will be any easier. AJ was able to come off …